‘People often forget their manners when greeting me and others with facial differences, severe skin conditions and disability. They blurt out what they are thinking about my appearance – often rude and insensitive and often projecting their feelings of insecurities. I just want people to say hello before launching into these questions – though I’d prefer they didn’t ask me at all.
‘I’ve just written a book called “Say Hello” – a memoir and manifesto about living with a facial difference and being disabled. It has stories of my life until now, anecdotes from other people, and advice for engaging with people with facial differences, severe skin conditions and disability.
‘From reading the book, I want people to be confident in their own skin – no matter how different it might be, and to remember their manners when talking to someone people with facial differences, severe skin conditions and disability.
‘I’ve loved receiving messages from people with Ichthyosis (the rare severe skin condition I have), telling me they felt alone until they read my work.’
‘On the last day we put him in the sunroom and we listened to Triple J and talked and that. I went home about 6 o’clock at night and we got the phone call at 4 o’clock in the morning and were told to come to the hospital. The nurse stepped out to stop us from going straight in to the room and told us. I got to see him and I gave him a kiss and all that and it was very peaceful but I wasn’t expecting it. It’s weird because there were other times during his illness that I was expecting it. The hardest things at those times, like when he had pneumonia so bad he was in intensive care for three weeks and had tubes down his throat and that, I had to realise that you can’t keep them alive for yourself. You’re not the one lying there with tubes down your throat – you can’t expect them to live for you. So I actually said to him, and I don’t know whether he heard me or not, I said, “Don’t stay alive for me.”
‘We were together for 15 years and 9 months. He made me who I am today without a doubt. And he made a lot of people. I think love, it can get you through things but also it’s very, very special. I don’t know that a lot of people will have what Goose and I had. Luckily, at the time, I knew I had it.’
‘I was born in Tanzania but Newtown was where I landed with my family when I was 8. It was our first encounter of Sydney and shaped our idea of Australia being this multicultural society and had a very positive impact. Newtown is a bubble but it shows that we have capacity to be that way as a whole. I feel like it reflects our best side and what we could be on a wider scale.
‘I came from a country where you just see one face so to speak which was my brownness. That didn’t really mean anything until I came here. When I came here I was different but there were just so many other differences that it was cool to be different. Newtown is a melting pot of cultures and demographics where we celebrate uniqueness and just being who you are.
‘I really believe in following my intuition and to follow what lights up my heart in whatever I do.
‘Follow your joy – go where you glow; go where you grow.’
‘One of my biggest challenges in life is just dealing with people. With some people it depends on how they’re day is going as to how they approach you as a person.
‘The way I was brought up though means that I just don’t really care about it. You don’t need everyone you meet. There are so many people in the world that if someone puts you down there are other people that can bring you up.’
‘I spent 3½ years photo-documenting enslaved prostitutes in Cambodia – Vietnamese women who were trafficked across the border.
‘These women were being raped repeatedly. One of the women’s wrists was covered in suicide marks and she was one of the women who knew what she was going in to. The state of mind, the cultural beliefs that are engrained in to these women or young girls, I can’t grasp it. It was a big hurdle for me to get over and I realised I can’t; it’s not a hurdle for me to jump.
‘I was back in Sydney and got an email from the NGO I’d been working with over there saying the raid had been performed and the women had been rescued as a result of my work. Up until that point, I had very little faith in what was happening from the NGO point of view. I got the impression that they were only investigating the shacks (brothels) while I was over there. Unfortunately it took a 9 year old child’s presence in that brothel to perform the rescue. Human trafficking is illegal and the police knew there were women in there that had been trafficked. I asked them what it took to perform a raid and the Cambodian police said to me they had a thousand other brothels like this one, why should they choose this one?
‘This whole experience has definitely challenged me. I had to see two psychiatrists while I was away. It centred me a lot as a person but it’s made me sad. I’ll never forget those women – especially the first girl I photographed – she was crying and curled up in a foetal position.
‘I feel proud now about what I’ve done – knowing that the 9 year old girl is now being educated and the NGO will give her a job when she finishes school as they will with the other women that were rescued in the raid. It’s a breaking of the chain. When the girl grows up, her children will then know they can get an education and get a job.
‘One of my favourite quotes is, “Every waterfall starts with a drop of water”. If I can help someone or inspire someone to do what I did or help in some way, I know I’ve succeeded.’
‘It was very late in life when I finally worked out what I wanted to do. I started at the age of 47. I think sometimes things are meant to happen at ages that you don’t expect things to happen.
‘I don’t wish it had happened earlier. I think my life has panned out just nicely. There were other things I wanted to do. I was convinced I wanted to be a beauty therapist and an actress. I did both of those things and then realised they’re not for me. My passion just naturally changed and I think there is a strong message in that for everyone looking at what they want to do with their life. It’s not too late to change your passion. It was very hard to let go of the acting because I studied for 3 years, did my degree and then wondered how I could possibly stop but I finally gave myself permission to finally let go. This is my new passion and I love what I do.
‘From about 14 I was drawn to vintage clothing. I went through a number of years working in retail, studying acting and always in creative fields. One day I was unhappy with where my life was going. I walked in to an antique shop. I was looking at a shop counter and the guy asked where my shop was. I said that I didn’t have a shop but just loved the counter. He asked me if I did have a shop what would I have and it just came out. I said to him that it would be a vintage clothing shop. I had an epiphany at the moment, walked out and rang my husband and my mum straight away and said to them I know this sounds crazy as I have no stock but I just want to have my own vintage clothing shop. I didn’t buy the counter. Someone else bought the counter and I kick myself to this day that I didn’t but it was the catalyst. It really was like a bolt of lightning. I literally walked on air out of that antique centre because I knew what it was that I finally wanted to do with my life.’
‘This year has been both good and bad. I had two close friends pass away so that was pretty shit. One died from suicide – hanging herself – and the other one passed away from a motorcycle accident so that was pretty sucky.
‘I’ve met some amazing friends through this year and the support I’ve got from all my friends when I thought I didn’t have many close friends was great. I thought I had friends that were more acquaintances and I didn’t expect them to be as supportive. Maybe I’m just paranoid but it was nice to feel like they actually truly cared and actively wanted to be a part of my life. It’s definitely made me feel better as a person as well.’